Friday, December 12, 2014

Winter’s Discontents

(Apologies to The Mamas and The Papas)

All the leaves are brown, and the sky is gray
I needed to go outside, on a winter’s day
Struggled with socks, sweater, coat; but when all was done and said
Barely had the strength, to just get back into bed…

Please excuse the above bad poetry (actually, it’s a gross disservice to poems to even call it poetry), but I just couldn’t resist. Here in New York City, winter is once again upon us, and along with the season’s cold and inclement weather, for us gimps the winter months are chock full of hurdles and obstacles that the able-bodied need give nary a thought. Simply donning get all of the cold weather gear needed to brace oneself against the chill can prove so damned difficult that the mere prospect of getting out of the house can be daunting all by itself.

In theory, at least, I like winter. The monochromatic palette of the winter months appeals to my black and white aesthetics, and I spent enough years living in Fort Lauderdale (yechh) to know that most human beings look better wearing several layers of clothing. Back in my healthy days I was admittedly something of a clothes horse, my closets brimming with cool duds. When I married my wife I owned more pairs of shoes than she did, and Karen isn’t a one pair for all occasions type of gal. My fetish for shoes goes way back, and my mom likes to tell tales of how, even as a toddler, I would torment shoe salesman by making them haul out box after box of footwear until I found a pair that met my precocious exacting standards. Why my mom allowed the little munchkin me such free reign to terrorize shoe store employees will have to remain a story for another day, but suffice it to say that I think she quietly got a kick out of my shenanigans.

But I digress, the subject at hand is the perils of winter for those of us trying to get through life with uncooperative bodies. Whereas I used to take delight in such winter wear as warm socks, comfy sweaters, and fashionable outerwear, these days all of these items have been transformed into potential instruments of torture. The right side of my body is almost completely defunct – weak, spastic, emaciated and largely paralyzed. My left side is still functional, but is weakening, seemingly by the day. Additionally, the more effort I exert the less functional my left side becomes, and with my fatigue levels at an all-time high my energy reserves leave much to be desired. All of this conspires to transform the formerly simple act of getting dressed into a feat of exhausting contortions, the anticipation of which often makes the thought of getting out of the house an extremely unpalatable option, even though being sequestered away inside my apartment for days and days on end is a recipe for mental malfeasance that also needs to be avoided. Quite the conundrum, then, once the temperature plummets.

During the warm weather months getting ready to go outside is a relatively simple affair, although struggling into a pair of elastic waisted shorts, a pullover short-sleeved shirt, and slip on shoes isn’t nearly as easy as it used to be. Still, even in my current dilapidated state it’s just a few minutes’ tussle and then I’m in my chair and out the door, willfully ignoring the fact that yes, my disease is indeed progressing. Once the temperatures drops below, say, 60°F, things get infinitely more complicated, and the very fact of my distressing physical decline from one season to the next cannot be avoided. Things that were merely difficult to do last year have now become almost impossible, and no amount of denial can paper over this reality.

The first bugaboo to be faced when preparing to venture out of doors all by myself is a pair of nefarious garments called “socks”. With a little effort and ingenuity I can usually get my left sock on without much calamity, but getting on my infernal right sock requires the use of a not so handy dandy device called the “Deluxe Flexible Sock and Stocking Aid” (click here). Basically, this contraption consists of a piece of relatively stiff but flexible material with two long straps attached. The flexible material can be rolled into a cone, on whose skinny end a sock can be scrunched up and pulled over (this miraculous feat is accomplished by my wife Karen the night before I’m due to make an appearance out in the world). In theory, then, a person can place the device on the floor and insert their foot into the wide end, and then by tugging on the straps pull the sock onto their foot using the flexible cone thing as a kind of guide. I’m sure this works quite well if the user has at least some dexterity in their right leg and arm. My right leg below the knee, though, has as much dexterity as a piece of overcooked fettuccine, so using this device is increasingly becoming an exercise in futility. The notion that I’ve become too gimpy to use a device made specifically for gimps thrills me to no end, let me tell you. As does the prospect of facing subfreezing temperatures without the benefit of a pair of warm socks. Sigh.

Next up in the cavalcade of whimsy that has become the process of my getting dressed are pants. Luckily, a couple of years ago I discovered that the Duluth Trading Company was selling fully elastic waisted decent looking trousers, which negated my needing to struggle with buttons or clasps to fasten my pants, which even back then had become nearly impossible. For whatever reason the company no longer offers these garments, but I was wise enough to stock up while the getting was good. If anybody knows of similar apparel currently available, please let me know. As long as they aren’t too, you know, ugly. Amazing how resilient vanity is, even in the face of progressing decrepitude, isn’t it?

After struggling with socks and pants, next in line are shirts and sweaters. Even the pullover variety are getting harder and harder to manipulate (the button-down kind may as well be radioactive as far as I’m concerned), and after struggling into them a somewhat disheveled appearance seems just about unavoidable, as a sleeve or shoulder always seems to be bunched up or stretched out in a way I can’t remedy given my limited amount of nimbleness. I suppose I should be happy that I can still don these garments, but there’s that dastardly vanity thing again. If I have to be a gimp I want to be a fashionable gimp, dammit!

Last comes the horror of all horrors, the winter coat. I used to wear all kinds of cool leather winter outerwear, retro car coats and flight jackets, but though these garments still hang in our closet, getting them on and fastened without assistance has become pretty much impossible. My mother-in-law, who is quite handy with a needle and thread, altered a standard military issue peacoat into a Velcro fastened wonder for me, for which I am eternally thankful. When closed up, the thing looks like any other peacoat, as mom fashioned the coat to make it look like the buttons are still fully functional, and folks are always surprised and tickled when I simply rip it open, which I try to do with a dramatic flourish. Still, getting the thing on and off of my stiff, spastic, and weakened body is no picnic, but I suppose we should be appreciative for whatever good graces still lay within our domain. So, yes, I’m quite grateful for my one-of-a-kind Velcro fastened peacoat. As I once said in a previous post, it’s like haute couture for the disabled.

Jeez, it looks like I just composed an entire blog post about the scintillating topic of my getting dressed. How horrifyingly mundane. Thing is, this freaking disease has made even the mundane a challenge, activities that had previously been taken completely for granted now fraught with anxiety, pushing my physical abilities to their limits and conjuring up a maelstrom of disheartening emotion. While the boundaries of those physical limits grow ever tighter as the disease continues its relentless progression I endeavor to live by the motto “use it until you lose it”, but as the losses mount the limitations imposed by these increasing deficits makes using what’s left harder and harder and harder. A decade ago, even on the coldest day of the year, I could be dressed and out of the house in 10 minutes, max. These days, that ever so humdrum of activities called “getting dressed” takes about 45 minutes at best, after which I’m often quite literally so physically spent that I’d rather get undressed and climb back into bed than go about whatever business awaits me out-of-doors.

But there is life yet to be lived, and with dogged persistence my comrades in arms (weak and spastic arms, but arms nonetheless) and I forge ahead as best we can, each displaying a quiet steadfastness that should be the fount of much pride, if I do say so myself. I will admit, though, that it’s hard to be prideful when you’re stuck with a sweater half on and half off, the nefarious garment doing its best impression of a straitjacket. Damned disease.

If you’ve made it this far through my long-winded description of getting dressed (egad), you deserve to be rewarded with the following musical delight, a version of The Mamas and The Papas “California Dreaming”, performed by the very underrated classic soul and R&B artist Bobby Womack, who sadly passed away earlier this year. Enjoy…

21 comments:

Bobby Womack's California Dreaming ROCKS!!! Well worth reading through dressing debacles with the Wheelchair Kamikaze. What a reward. Think I will listen and watch yet again. And the video is sweet. (like Lou Feriggno, not Mary Poppins) For your malcontent posting I offer Jim Carrey's Commencement speech at MUM (University) on YouTube. Enjoy... and be well...

Marc, you hit the 'nail on the head', my wife is constantly 'straightening' my sweaters. I find with socks (sitting down of course) if I actually lift my leg / foot I'm able to ALMOST put my socks on however in theory it sounds easy, in practice well not so much.Since winter is definitely here in upstate NY I'll spend more time indoors rather than go through the 'prep' of getting ready then being too tired to actually do whatever 'lame' thing I was going to do!

Yes, more and more whatever I "need" to do outdoors seems to get less and less urgent when the cold weather hits. So hard to believe that socks have become such a Rubik's cube. Socks, of all things! Can you think of a more benign item? It's as if something as seemingly harmless as, um, white bread was suddenly a problem. Oh, wait a minute, bread is not on my Paleo diet. Freaking disease…

I can SO relate. Getting a winter coat around my back without falling out of my chair is exhausting! Thank goodness I'm a woman and ponchos are back in style. Yeh they're not as warm but should be easier to put on (I asked for one for Xmas).

While reading this, I thought, "this is me," except I'm a different gender, and the opposite side of my body is the main problem so far. In addition to the dressing issues you highlight, I also have to put on a compression stocking which requires a different sock aid than the one you mentioned AND THEN the device you use for the other foot. After that, my husband has to help me with my leg brace and shoes. If I were alone, I would stay home in my slippers (sockless).

Like you, I am so tired after bathing and dressing, that I need time to recover before attempting the coat and scarf routine needed to leave the house in Indiana winters.

Thanks so much for your beautifully written commentaries on progressive MS, the bane of of my existence since 1993. I will share your entry with some family members who don't quite "get" what it takes for me to be able to "go out."

So sorry that you can so closely relate to what I wrote about. Sometimes, even as I'm trying to get dressed, I find my mind boggled by the fact that what was once accomplished with almost no thought whatsoever now requires meticulous preparation and an incredible expenditure of precious energy. With my wife helping me, getting dressed is MUCH easier, but she's the working member of the household so during the weekdays I'm on my own…

It is a problem that so few healthy people "get" what it takes for us to get out the door. Certain friends still call and ask me to go out on the spur of the moment. These days, I can't do much of anything on the spur of the moment. It's more like "the spur of tomorrow".

Since I am in pretty much the same shape you are in, disability wise, all of this has resonated loudly!

I have chosen to become a houseplant for the duration of the winter months, precisely because the trials and tribulations of getting out of the house are just more than I wish to deal with. I can still manage by myself when donning my Levi's and oversize pullovers, as well as underwear. However, I don't bother with socks or shoes in the house – – ever.

If for some reason I am required to venture outside, for instance to go to town for a Dr. appointment or something, my husband has to assist me in getting on my shoes (stretchy slip ons) and jacket. It is sort of like dressing a baby, because of the uncooperative arms and feet.

I admire your gumption, because to you it is obviously worth the hassle to get out and about!

These days I generally only go out for doctors appointments or other such necessities, just like you. During the warmer months I do try to get out just for the heck of it, but during the winter the effort is just too much to put myself through. Especially since sitting in a wheelchair generates absolutely no body heat, making the cold is that much colder.

I must confess that in the house I am usually content to sport sweatshirts and sweatpants, along with some comfy slippers. I fear I won't be making any best dressed lists anytime soon… Such a glamorous life…

I don't whether to feel comforted that someone else understands or weep that this is the situation. Though you are more severely affected than I, there was so much of what you said that resonated with me. I hope for more kindnesses along the way to ease your path.

Thanks, Judy, for the well wishes as well as the commiseration. It does indeed suck royally that so many can relate to this situation. Our worlds have indeed been turned inside out, in this case almost literally so. I spend so much time looking at the outside from inside, it's almost as if I'm observing some alien world. That's a disconnect that can in some ways be as debilitating as the disease itself, so the effort must be made to stay connected. Socks, on the other hand, may have to be abandoned…

I so admire you for persisting with the worsening struggle, Marc. I get it, and I do it too...sometimes goodhumoredly, sometimes not so much. But what's the choice? Just keep on keepin' on, I guess.Some days I do retreat back into the beckoning bed, and others I am proud of myself for making the big push to get out, despite the hassle and the cold. Stay strong, dear friend. Your blog does us all a tremendous service. I am so grateful to you. Roberta

Thanks so much for your very encouraging words, Roberta. Much appreciated. Seems that I can, at times, be good-natured and not so good-natured about this predicament, almost simultaneously. Strange, but true. Guess it's a kind of gallows humor…

I think it's important to try not to view those days when you do get back into bed as a retreat. Sometimes you just have to listen to your body, even if it's saying something you don't want to hear. On the other hand, it's definitely vital not to give it any encouragement…

Thanks for your very kind words about my blog, the fact that my writing has been able to help some folks has at least put a little method to all of this madness…

I find your writing to be very humorous, and oddly comforting. I face the same challenges daily. A new "wrinkle" to this whole thing is now my ability to swear like a drunken sailor as I become increasingly frustrated AND pissed off.

Good fucking grief, without cursing I'd really be up shit's creek. For craps sake, I must admit that I used some pretty fucking colorful language even before I was struck with this goddamned pisswad of a disease, but at least now I have a really good fucking excuse for all of the ass ripping obscenities…

I found a dressing aid kit online that is very useful. The kit was originally designed for people recovering from hip replacement surgery, but I have found it useful as a dressing aid for when I am in my wheelchair or sitting on the bed or chair. It is called a Daily Aid Kit and comes with dressing stick, reacher, bath scrubby stick, shoe horn, and a stocking aid.

Sign up to Receive New Posts by E-Mail

E-Mail Me

Regretfully, due to the high volume of e-mail received and the realities of living with progressive MS, I'll no longer be able to respond to all e-mails sent. I do read each note, and will do my best to answer as many messages as I can.

About Me

I'm Marc, a 53-year-old male, living in New York City with my lovely and wonderful wife Karen. Diagnosed with Primary Progressive Multiple Sclerosis in March of 2003, I now require a wheelchair to get around the city. I like to drive the wheelchair at full speed, thus the moniker "Wheelchair Kamikaze". I've managed to rig a camera to my chair, so I'm able to take videos and still photos from the unique vantage point of a wheelchair, which I intend to post here.
Before getting sick, I was the Director of DVD Production for one of the major international music companies. Yes, I was once a member of the Evil Empire...
Prior to my enlistment in the Evil Empire, I worked as a video producer and editor.
I grew up in New York City, and spent the 1980s in Boston (college and postcollege rock 'n roll craziness). During the 1990s, I lived in South Florida, until I woke up one morning and realized I was living in South Florida, came to my senses, and moved back to New York.
I hope you like my blog...